My 5 year old daughter was diagnosed with A.L.L On 27th February 2018. The first week was a whirlwind of information and treatments and I found myself coping well. Three weeks in and I feel so so bad about it all. Her hair is coming out quicker than I thought it would, she's having allergic reactions to her medication and has an infection in her LP site. They don't know what's causing it and her treatment plan has been postponed due to these side effects. I've been in hospital for best part of three weeks and I don't know how I'm going to do this. She is being so so strong though and seriously makes me feel pathetic for feeling so weak when she's so upbeat. Any advice is much appreciated as I don't even know how to describe what I'm feeling
A very warm welcome to the online community. I am so sorry to hear about your daughter and the allergic reactions she's having and the infection. I haven't been through what you are going through as a parent - I found this site when I had breast cancer. Many years ago, my cousin had leukaemia at 5 years old and I did see my aunt go through that with him. All I can say is that somehow you will find the strength. You are not being weak - you love your daughter and want to make this go away and it is an incredibly difficult thing to have to bear. I hope you have some support also - even someone to just go to the hospital canteen with to get a coffee. You need to take care of yourself, too and that can feel wrong at times, but you are not a bottomless pit, emotionally- you are going through this too and you need to draw on others to support you.
I see you have joined the ALL group already and I am sure you will get a warm welcome there. This parents group is not particularly busy so you might get more support in other groups. The community is a very friendly and wonderfully supportive place and we want to be able to help you as much as we can. We also have a Family and Friends group which is a bit more active than this one and you may be able to find someone to connect with there. There is a Carer's group too. I'm not sure which would be more helpful to you.
There is also the helpline if you ever need a "live" listening ear - they are fantastic for advice and help but can listen too and may be able to suggest other sources of support for you. 0808 808 00 00 Monday to Friday 9am to 8pm. They are there to support anyone affected by cancer.
I hope that your medical team manage to sort out the allergic reaction and infection soon.
Sending you virtual hugs
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